Self advocacy for people who stammer

St John Harris found disability theory invaluable and argues that it would also benefit speech and language therapists

In Autumn 2000, I attended a ground-breaking course at the City Lit in London called Self-advocacy for People who Stammer. I had previously attended five or six courses there, the first being a life-changing two-week intensive course in 1994 which introduced me to the theories of Van Riper and Sheehan.

Why self-advocacy?

A key goal behind much of my speech therapy at The City Lit has been to be more honest and self-accepting about my stammer. The more open I become, the more objectively I can focus on the physical act of stammering as a basis for modifying my speech. This process of 'desensitisation' is hard work. We were told during the first course that we were in for the long haul. The familiar image is of the iceberg - below the surface lies a dark mass of negative feelings and avoidance behaviour, and above, the dysfluency which, despite my vigilance, can break out at any time.

The self-advocacy course gave me a valuable opportunity to question all the negative emotional baggage and to review my identity as a person who stammers. I wanted to challenge received notions and stereotypes, and to embrace new possibilities and ideas.

the social model takes the power to decide who is disabled away from the expert and returns it to the individual

Course outline

Broadly, the course consisted of 10 weekly two-hour sessions, divided into two halves. The first five weeks concentrated on giving us the theoretical tools to help us understand our condition and address questions of identity. From week one, we were given the task of preparing our 'personal portfolios' to be delivered in the second half of the course. The portfolio did not have to focus exclusively on stammering, but was an invitation to each of us to tell a story about ourselves, and in doing so, to reveal something important in our lives. Relationships, work, interests, triumphs, disasters, dreams and ambitions were all possible ingredients. We could use whichever media we felt were most appropriate: essay, photographs, drawings, collage, poetry, even music if we wished.

In the second week we were guided through the difficult and potentially awkward topic of 'being different'. Language, accent, ethnicity, and sexuality are some of the ways we can feel different from the majority. We inevitably felt a little tentative discussing such personal issues on what was only our second meeting. However a common theme emerged of a deep-seated urge to blend in with the majority and to minimise the effect of difference. I cited the almost unconscious manner in which my accent modifies according to my company, noticeably in formal situations at work.

From difference in general, the discussion naturally led to stammering and the similar urge to cover up. What are the advantages and the drawbacks of maintaining a fluent facade?

This examination of difference paved the way nicely for what was for me the most fruitful and important theoretical issue in the course: disability. Most of my colleagues were happy to discuss stammering as a disability, but some resisted the association and were not prepared to address the 'problem' of stammering in these terms.

I have recently come to the conclusion that it doesn't make much sense to pose the question: is stammering a disability? This is principally because the very definition of disability is open to question and to choice. But if you do deny stammering is a disability, you deny yourself a conceptual framework in which to say many useful and worthwhile things about stammering. As John Swain and Colin Cameron have argued: "Perhaps the most significant consequence of coming out, apart from the positive impact the process has for the personal identities of disabled people themselves, is that, in the act of coming out we are changing the very meaning of disability."

The struggle to be more positive and open about stammering is reflected for me at least in the conceptual struggle to embrace a transformed meaning of disability. There are profound connotations from which the term and therefore the experience of disability will never be free: not able, not whole, not normal. In the third session we examined the conflicting positions defined by where each locates the 'problem' of disability. According to the medical model, the problem is the individual's impairment which should, if at all possible, be cured. By contrast, the social model views the problem as environmental, located within society and society's attitudes towards the impairment which the individual internalises. But neither model can be applied simplistically, especially in the case of stammering, where the relationship between the disability and the impairment is so complex.

What the social model does achieve is to take the power to decide who is disabled away from the medical expert, and return it to the individual. My disability is defined by the degree of social oppression I feel with regard to my impairment. In my experience, and I believe in the case of many people who stammer, this is largely self-oppression - the internalisation of negative attitudes about stammering. A curious aspect of my dysfluency is that the self-oppression goes to the heart of the physical impairment. In the words of the speech pathologist, Wendell Johnson: "Stuttering is what you do trying not to stutter again."

Barriers

In the fourth session, we proceeded to explore the 'disability' of stammering further, understood as the interaction between impairment and the diverse barriers we face in the physical and social world. Barriers come in various forms, for example one environmental barrier is the answerphone which does not give me enough time to finish my message. The most pertinent for the group were the attitudinal barriers to stammering - other people's unhelpful attitudes and our own limiting self-beliefs. We spent much of the session thinking of how to address these. Openness and assertiveness both emerged as key qualities, as was the ability to recall positive role models of people who stammer.

But where are these positive images to be found? In the fifth session we discussed the portrayal of stammering in the media, as part of the wider picture of cultural representations of disability. Two particularly stark stereotypes were the stammerer as deranged and violent victim turned aggressor in Prime Suspect and Cracker and the stammerer as an object of ridicule in A Fish Called Wanda. In both instances, the image of dysfluency is distorted and exploited for either dramatic or comic effect. Such media images both reflect and perpetuate deeply engrained cultural 'narratives' about disability. No wonder, according to Sally French: "Most people have a rather simplistic and superficial understanding of disability." Very rarely do we see in the mainstream media, representations which do justice to the complexity of stammering.

The sixth and seventh sessions were devoted to the presentation of the portfolios. Here was our opportunity to tell our own stories, to describe, however indirectly, the experience of stammering at first hand - as distinct from the one-dimensional stereotypes found in the media. Each member of the group approached the task in a different way; some more specific about stammering than others. But the overall effect was of an extraordinary composite of ordinary lives. I felt I had made the most of an opportunity in some way 'to set the record straight' and to record faithfully the impact of a much misunderstood disability on my life.

The theme of self-expression was developed further in the following session when we tried to articulate visually the significance of stammering in our lives. Some found the exercise enormously liberating, giving free rein to the imagination to express profound emotions in a very vivid and immediate manner.

In the penultimate session, in vox pop style, we each sat in front of the video camera to have 'our shout' about stammering. This was a more focused attempt to counter unhelpful misconceptions and attitudes. Although each of our shouts delivered a different message, common threads ran throughout: "Don't jump to any conclusions about me", "Give me a chance to have my say"; "Don't laugh at me." The individual shouts seemed to mesh effectively into a collective voice, which was further reinforced by the group work we did later.

By the time we reached the final session and were reviewing our progress, I felt we had worked hard both as individuals and as a group to build alternative narratives about stammering. Carol Thomas notes that self-affirming narratives: "Once re-forged, are not fixed and static - they have to be continually worked at if they are to be sustained in the face of more dominating disablist social narratives." The group turned out to be a powerful means of assessing negative attitudes towards stammering and developing a positive response, even if we could not agree about its status as a disability. It seemed natural to meet again, as we have done, to continue sharing our experiences in this constructive way.

Personally, I have improved my grasp of disability issues, and feel more relaxed and confident about my identity as a disabled individual. The amount of theory on the course was not to everyone's taste - therapists may wish to downplay this aspect accordingly. However, without the theory I believe I could not have attained the same degree of awareness of the challenges of stammering, self-identity and disability. Challenges, not solutions. There is no right way to cope with or indeed to regard stammering, but there are plenty of wrong ways, perpetuated by therapies which can inflict untold damage on people's lives. For example, stammering therapy courses which are based on the aggressive application of the medical model of disability can begin by demonising stammering. They make much of the plight of the stammerer and their inferior status, and then set out to slay the monster. There is no middle ground between abject failure and the dizzying heights of success effected by their 'cure'.

A grounding in disability theory is a good way of deepening therapists' understanding of the essential paradox of stammering summed up by Wendell Johnson - a paradox which has ramifications on all levels of stammering therapy. This I would argue is the most valuable aspect of the course; maybe not for all clients, but certainly of the widest relevance to speech and language therapists.